Diagnosed with Crohn's Sept 15

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gumby44
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Date Joined Nov 2007
Total Posts : 4338
   Posted 10/1/2017 7:50 PM (GMT -6)   
Stopping the Prednisone might make sense, but I don't think she should stop the Prednisone until you speak to her GI first. I don't know the extent of the disease, and it goes without saying, but none of us are doctors here. I'm so glad she is feeling better though. Stopping the mezalamine should have no ill effects, and it if she is intolerant, it sounds like it helped. But if she has severe inflammation, then she might need the Prednisone until they can get her loaded with a maintenance medication that will work, and then she can taper off the steroids.
It's great to become educated about Crohn's so you know what questions to ask your doctor, and to help you evaluate if you like and trust the doc you are using. But if you find a good doc, then you need to be able to trust him/her enough to come up with a treatment plan. I know this is all so scary, especially when it comes to getting care for your child, but the important thing is that she is feeling better now.
There is lots of great info on internet forums and it does help you to know what questions to ask or consider, and to get support, but we can't replace a good doc for knowing what to do.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9921
   Posted 10/2/2017 6:18 AM (GMT -6)   
Pred doesn't do anything to treat inflammation, it literally just dampens it down without healing anything (unlike, say, Remicade which has been proven to heal the mucosa). People take pred because they don't want to have to live with awful symptoms for 2-3 months until their maintenance meds kick in.

I was on pred for almost the entire time in the year leading up to my surgery. It worked, in the sense it suppressed my symptoms, reduced inflammatory markers, and I was able to eat normally and stuff. But when I had my colectomy, my colon was described as having severe chronic and acute inflammation throughout. I was shocked at how there was no healing at all. No wonder I was back in hospital every time I tried to come off pred.

I'm not saying the topic creator should definitely tell her daughter to stop pred for a few days. I am saying it won't do any harm if she does: it might make her symptoms worse, but it will not make her inflammation any worse.

straydog
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Date Joined Feb 2003
Total Posts : 14976
   Posted 10/2/2017 9:24 AM (GMT -6)   
Gumby has made an excellent point on starting & stopping meds, clear it with the dr.. You & your daughter are new to this. I cannot stress enough to go to reputable websites & educate yourself about this disease & your daughter is old enough to learn too. Learning about medications used to treat crohns is very important.

Once the dr has the biopsy report in hand he will may take a different approach for treatment. As it is now you seem to not know where he found the inflammation or how bad it is, crohns can range from mild to severe. I think this may be why he rx'd the meds that he did, he wanted to see what the biopsy shows. The scope & biopsy are still pretty much the golden standard for dxing.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

LoveMyKiddos
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Date Joined Sep 2017
Total Posts : 10
   Posted 10/2/2017 5:49 PM (GMT -6)   
Hi all.
I don't know how to respond to each of you separately but will try.
When my daughter had her colonoscopy, it showed a clear rectum, and as you went farther up the large intestine, it started to show ulcerations. Going further, the ulcerations got closer and closer and then all joined together. The ileum was clear, and still healthy. She needs to have an MRI to check the rest of her small intestine. I honestly don't know what they found in the biopsy, but I think it was unclear. The GI really doesn't tell us that much unless we ask, and I don't know what to ask. I think they did NOT get a granuloma biopsy, so it is unclear. They are treating her with crohn's because the rectum was clean.
They put her on mesalamine right away. After 6 days, she was so much worse. Bloody diarrhea,( whereas before it was just plain diarrhea), bad, bad stomach cramps, and bowel movements every hour, all day, all night. No sleep at all.
We went to 3 hospitals in one week. No-one would tell us what to do. GI knew we went. No one suggested it was worse because of the mesalamine until I read all your posts. Doctors have no clue!!!!
I even phoned the pharmacist to ask their professional opinion, and they said they really couldn't say. They are the only ones that did check the side effects though.
My husband and I decided after reading all your lovely and informative posts, that we would take her off mesalamine. She was off only one day, and was feeling better, with a full night sleep. The second day off mesalamine, she started prednisone. Feeling much, much better. No bowel movements all night. We then decided to put her back on mesalamine to see if she gets worse (this was just last night). She slept all night, but is having a really bad day now. She has taken prednisone this morning for a total of 3 doses.
We had a GI appointment today. Told him we took her off mesalamine for 2 days for an experiment and was feeling better. He said he would put her on Asacol (smaller doses throughout the day). We said, but isn't this the same drug, just different dosage?
He said, fine, just stay on prednisone, and come see me in a month. She is to take 40mg for 2 weeks, and every four days, take one less pill, until finished.
I think I'm reading a lot, and also learning so much from all of you. I do feel somewhat educated with reading many websites, however, i feel the doctor isn't listening to me. Today's was all of 5 minutes. I didn't want to talk, so let my hubby talk. The GI was very short with us.
Now I am worried that the prednisone won't help and she isn't going to be on any meds that will make this simmer down.
I am at a total loss.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9921
   Posted 10/2/2017 6:20 PM (GMT -6)   
I'm sorry for what seems like a really stressful start to your daughter's diagnosis. I can see why she got the Crohn's diagnosis: UC virtually always starts in the rectum and spreads upwards, whereas Crohn's is the opposite. One small bright spot is that the terminal ileum was clear. If that is unaffected, then most likely the rest of the small bowel is as well (she should still have the MRI to check though).

An up-to-date doctor should also know that mesalamine really isn't a very effective medication for Crohn's - it might be okay for mild cases which only affect the inner layer of the gut (there are several layers in the bowel, and Crohn's can go through all the layers - the technical term is transmural inflammation). But for anything more severe, mesalamine won't cut it.

You are right about Asacol: it's the same drug, just has a different coating.

The GI didn't suggest anything else other than to take prednisone for a month? I'm hesitant to suggest changing GIs so soon, but between this GI's crappy bedside manner and his unwillingness to offer anything besides prednisone and more mesalamine I would consider it. Not all doctors are this curt and unhelpful: most of them are happy to answer questions and spend longer than 5 minutes with you.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1615
   Posted 10/2/2017 6:51 PM (GMT -6)   
I will say this much: I think you're doing a good job with your daughter. I know it can all be extremely stressful, especially at first, but you're doing good by asking questions, looking up things, researching, learning, etc. And most importantly: Being her advocate. That's a great start.

It does seem you daughter very well may have mesalamine intolerance. And if that's the case, another mesalamine isn't the answer - it will cause the same problem! And another mesalamine isn't the answer anyway, because it's not a good treatment for Crohn's disease.

I think of it this way:

With UC, if you take 25 patients, mesalamines will help 15 of them, won't do much for 9 of them, and will make 1 of them worse. So I'd say it's well worth the odds of trying mesalamines for UC.

With Crohn's, if you take 25 patients, mesalamines *might* help 1 of them, won't do much at all for 23 of them, and will make 1 of them worse. So is it worth taking? I say no.

In your daughter's case, likely being one of the 25 that gets worse, the answer is certainly no.

As NiceCupofTea says, you might want to find another doctor or at least get another opinion. Most GIs are slowly but surely learning that mesalamines aren't a good treatment for Crohn's. But some remain either ignorant or stubborn.

It's good to get an MRI done to check the small bowel.

And prednisone is fine for the short term.

But a long-term treatment is appropriate in most people with Crohn's (a few mildest cases can get away without a 'maintenance' medication for long periods of time).

caia_120
Regular Member


Date Joined Dec 2013
Total Posts : 99
   Posted 10/3/2017 5:57 AM (GMT -6)   
If I were you I would try to find a new GI who specializes in IBD, I don't think it takes more than a couple of appointments to know if the one you have is worth staying with. You should not leave an appointment felling like the doctor wasn't listening. I have seen about 10 GIs since I was diagnosed in 2002, thanks to my husband being in the military and moving on average every 2 years, only about half of them were worth seeing and really knew how to treat Crohn's disease. Also, not to scare you, but my understanding is that the younger the age at diagnosis usually predicts a more severe disease course so I wouldn't want to mess around too much with drugs that likely have no benefit.
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